So today was one of the most tiring, frustrating days that I have had in a long time. However, somewhere between the early wake-up, the toilet flowing over, the multiple wet sheets (by one child), the clean kitchen floor suddenly covered in something sticky (which of course nobody knows anything about), the phone call telling me that my husband would be out of town all next week as well, the therapies, appointments, and hour long session with Bryce's case manager where I had to explain over and over again the fact that no, Bryce is not going to get better, No, he is not going to be able to eat by mouth, walk, talk, etc. again (yes, even if we set a goal for that), yes, it really does take over an hour to get him (just him) ready for the day, and everything else that happened today, something really cool happened. After Annalise's useless appointment at CRS this afternoon, we walked across the street to visit the staff at The Ryan House and to pick something up from there that we had left during our last visit. Annalise was in her walker and as we went through the front doors, she looked around and suddenly threw her arms up in the air and said loud and clear, "I'm baaack!" (She is 2. Where does she come up with these things?) She then proceeded to walk right in and all around the place like she owned it. It was so funny. I wish I had had a video camera. There were two staff members there who we have worked with before who had just come up to welcome us. The one said that this had to be the best entrance she had ever seen.
The other cool thing was that while we were at Ryan House, we got to meet Ryan, yes, THE Ryan of the Ryan House. He is a really sweet 10 year old boy with SMA. He was in a wheelchair and instantly began playing and racing with Annalise. Him in his chair and her running in her walker beside him. He would then race up to her like he was going to run into her and stop just in time. She laughed and laughed. SO CUTE! It was like they were instant friends. There really is something special about these kids! I didn't get any pictures, so hopefully we will get to meet Ryan again some day. I did sign us up for a couple more visits for later this year though. I LOVE that place!
The other cool thing was that while we were at Ryan House, we got to meet Ryan, yes, THE Ryan of the Ryan House. He is a really sweet 10 year old boy with SMA. He was in a wheelchair and instantly began playing and racing with Annalise. Him in his chair and her running in her walker beside him. He would then race up to her like he was going to run into her and stop just in time. She laughed and laughed. SO CUTE! It was like they were instant friends. There really is something special about these kids! I didn't get any pictures, so hopefully we will get to meet Ryan again some day. I did sign us up for a couple more visits for later this year though. I LOVE that place!
4 comments:
I am new to your blog. It is so frustrating not to have answers. Right now we are looking into luekodystrophy and I hope that it is not it, but at the same time it is frustrating to keep seeing your child regress and not know what is causing it or what your future holds. I hope that you guys are able to find answers. You will be in my thoughts and prayers.
Jenna, welcome to the blog. I hope that you will find answers soon as well. I hope that your son does not have any type of Luekodystrophy, but yes, it is so frustrating to watch this happen to our children and not know why it is happening or how to help. The way I feel now is that I know it is happening, so I would like to know why! Please feel free to contact me anytime at clayton.tammy@gmail.com I would love to talk with you. It can be a lonely road, so it is always nice to talk to others who understand a little of what you are going through. Good luck to you and thank you for the thoughts and prayers. You will be in mine as well!
Tammy- that story of Annalise walking into the Ryan House is priceless! I'm sure it made the staff at Ryan House's day. Glad you were able to meet Ryan too - he is a great kid.
I've had one of those useless visit to CRS. My first and last visit! Sorry I haven't been in touch since our August visit - but, I do check your blog often. Thanks for linking Jack's blog :) We are currently in Oklahoma City - on our way to St. Louis for Jack to have eye surgery. I'd love to get the boys together now that it's cooled down. I'll touch base with you when we get back in town. Hang in there and hugs!
Ann (Jack's mom)
Hi Tammy,
Thanks for the reply, I am so grateful for the online community. I feel really distanced from my friends lately. They are spending their nights planning homeschooling stuff and crafts and I am spending so much time researching NORD trying to find answers.
Jenna
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